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Life with a stoma across five European countries—a cross-sectional study on long-term rectal cancer survivors

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Abstract

Purpose

Stoma-related problems are known to be important to patients and potentially affect everyday life. The prevalence of stoma-related problems in rectal cancer survivors remains undetermined. This study aimed to examine aspects of life with a long-term stoma, stoma management, and stoma-related problems and explore the impact of stoma-related problems on daily life.

Methods

In total, 2262 patients from 5 European countries completed a multidimensional survey. Stoma-related problems were assessed using the Colostomy Impact score. Multivariable regression analysis, after adjusting for potential confounding factors, provided odds ratio (OR) and 95% confidence intervals (CI) for stoma-related problems’ association with restrictions in daily life.

Results

The 2262 rectal cancer survivors completed the questionnaire at a median of 5.4 years (interquartile range 3.8–7.6) after stoma formation. In the total sample, leakage (58%) and troublesome odour (55%) were most prevalent followed by skin problems (27%) and pain (21%). Stoma-related problems were more prevalent in patients with parastomal bulging. A total of 431 (19%) reported feeling restricted in daily activities in life with a stoma. Leakage, odour, skin problems, stool consistency, and frequent appliance changes were significantly associated with restrictions in daily life. The highest risk of experiencing restrictions was seen for patients having odour (OR 2.74 [95% CI: 1.99–3.78]) more than once a week and skin problems (OR 1.77 [95% CI: 1.38–2.27]).

Conclusion

In this large cohort with rectal cancer, stoma-related problems were highly prevalent and impacted daily life. Supportive care strategies should entail outreach to patients with a long-term stoma.

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Data availability

There are no plans of making the datasets used in this study publicly available.

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Acknowledgements

We thank Nuno Vilela, Joaquim Costa Pereira, Edgar Amorim, Diana Parente, Rita Malaquias, and António Oliveira for assistance in data acquisition for the Portuguese cohort. We also thank Meritxell Pera Ferreruela for assistance with the database at Vall D’Hebron hospital in Spain. Finally, we thank patients for participating in our study.

Funding

The working hours of Helle Ø Kristensen were funded by the Danish Cancer Society and the Department of Clinical Medicine at Aarhus University Hospital. The Bengt-Ihre Foundation funded work-time for data collection in Sweden. The funding had no impact on the design or conduct of the study or any other aspects of the study.

Author information

Authors and Affiliations

  1. Department of Surgery, Center for Surgical Science, Zealand University Hospital, Lykkebækvej 1, 4600, Koege, Denmark

    Marianne Krogsgaard

  2. Department of Surgery, Aarhus University Hospital, Aarhus, Denmark

    Helle Ø Kristensen, Anne Thyø & Peter Christensen

  3. Danish Cancer Society Centre for Research On Survivorship and Late Adverse Effects After Cancer in the Pelvic Organs, Aarhus, Denmark

    Helle Ø Kristensen, Katrine J. Emmertsen, Anne Thyø & Peter Christensen

  4. Department of Surgery, Division of Abdominal Surgery, University of Groningen, University Medical Center Groningen, Groningen, the Netherlands

    Edgar J. B. Furnée & Sanne J. Verkuijl

  5. Surgery – Colorectal Unit, Centro Hospitalar de Leiria, Leiria, Portugal

    Nuno José Rama

  6. Colorectal Surgery Unit, Champalimaud Foundation, Lisbon, Portugal

    Hugo Domingos

  7. Colorectal Surgery Unit, Instituto Português de Oncologia, Lisbon, Portugal

    João Maciel

  8. Colorectal Surgery Unit, General Surgery Department, Universitat Autonoma de Barcelona, Hospital Vall d’Hebron, Barcelona, Spain

    Alejandro Solis-Peña & Eloy Espín-Basany

  9. Department of General and Digestive Surgery, Coloproctology Unit, Bellvitge University Hospital, Barcelona, Spain

    Marta Hidalgo-Pujol & Sebastiano Biondo

  10. University of Barcelona and IBIDELL (Bellvitge Biomedical Investigation Institute), Barcelona, Spain

    Marta Hidalgo-Pujol & Sebastiano Biondo

  11. Division of Coloproctology, Department of Pelvic Cancer, Karolinska University Hospital, Stockholm, Sweden

    Annika Sjövall

  12. Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden

    Annika Sjövall

  13. Department of Surgery, Regional Hospital Randers, Randers, Denmark

    Katrine J. Emmertsen & Anne Thyø

Authors
  1. Marianne Krogsgaard
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  2. Helle Ø Kristensen
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  3. Edgar J. B. Furnée
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  4. Sanne J. Verkuijl
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  8. Alejandro Solis-Peña
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  15. Peter Christensen
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Contributions

MK and HØK designed the life with a stoma study. HØK performed statistical analysis and MK and HØK interpreted data. MK drafted the manuscript. HØK, AT, KJE, and PC contributed to the conception and design of the survey. HØK, EJF, SJV, NJR, HD, JM, ASP, EEB, MHP, SB, and AS collected all data. All authors (MK, HØK, EJF, SJV, NJR, HD, JM, ASP, EEB, MHP, SB, AS, KJE, AT, PC) revised the manuscript critically for intellectual content, and read and approved the final manuscript.

Corresponding author

Correspondence to Marianne Krogsgaard.

Ethics declarations

Ethics approval

The study was approved by the Danish Data Protection Agency (Journal No. 1–16-02–832-17).

Consent to participate

We obtained written informed consent from participants.

Consent for publication

We obtained written consent from participants.

Conflict of interest

Marianne Krogsgaard has received honoraria from Coloplast for lecturing on parastomal bulging. For the remaining authors, no conflicts of interest were declared.

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Krogsgaard, M., Kristensen, H.Ø., Furnée, E.J.B. et al. Life with a stoma across five European countries—a cross-sectional study on long-term rectal cancer survivors. Support Care Cancer 30, 8969–8979 (2022). https://doi.org/10.1007/s00520-022-07293-y

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